Bridging the Gap in Healthcare Information Access for Caregivers

Editor’s Note: This is an opinion piece submitted to the Journal of AHIMA. The opinions here reflect the author and not AHIMA.

Numerous studies underscore the critical importance of collaboration among patients, caregivers, and healthcare providers in improving healthcare outcomes. The World Health Organization (WHO) recognizes the value of patient-centered care, emphasizing patient involvement in decision-making processes. Furthermore, the Agency for Healthcare Research and Quality (AHRQ) also supports collaborative decision-making, citing its benefits such as improved patient knowledge, realistic expectations, better adherence to treatment plans, and heightened patient satisfaction. 

In a recent Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, conducted in April by the Centers for Medicare and Medicaid Services (CMS), recently discharged patients were asked to rate their communication experiences with healthcare providers during their hospital stays. Shockingly, 53 percent of respondents rated their communication with providers as “average” or below on a Likert scale of 1 to 5, where 5 denotes excellence and 1 signifies poor performance. The survey also included inquiries about the clarity of explanations, active listening, and effective communication, yielding similar outcomes. 

As a primary caregiver for a loved one that battled a terminal illness, I witnessed firsthand the communication challenges among the patient, caregiver, and care team. Often, crucial information was missing, and opportunities for patient autonomy in decision making were rare or an afterthought. Multiple providers informed my loved one that there were no further treatment options, yet there was never a comprehensive discussion with me — as their primary caregiver — about the choices explored to arrive at this conclusion, until I specifically requested it. 

In the realm of electronic health records (EHRs), efforts have focused primarily on connectivity and facilitating information exchange through health information exchanges (HIEs). These initiatives aim to improve accessibility to care-related information for patients and providers alike. However, as research published in JAMA Open Network highlights, the current landscape of patient portals primarily offers proxy access to individual medical records, neglecting the broader healthcare needs of families and caregivers. EHR systems need to evolve to encompass the ability for caregivers to actively interact with the care team, bridging the communication barriers and creating a more patient-centric healthcare environment not merely reduced to medical records. 

As a health information professional, I possess the unique ability to comprehend the current healthcare landscape. Still, it is my firsthand experience as a former caregiver that allows me to shed light on the crucial gaps from both the patient and caregiver perspectives. While caregivers do have proxy access to patient portals, it often limits their role to passive information recipients rather than active participants in the care process. 

The JAMA research emphasizes that while caregivers are using patient portals, password-sharing is rampant, and it raises concerns about patient privacy and best practices for proxy patient portal adoption. This highlights a significant limitation in the current system where caregivers are provided access primarily for information-sharing purposes, rather than facilitating their active engagement in the care journey. 

The healthcare landscape is evolving, and innovative solutions are needed to bridge the existing communication gaps among caregivers, patients, and healthcare providers. These solutions should aim to empower caregivers to be more than just passive observers but active participants in their loved one's care journey. We cannot solely rely on providers to maintain the continuum of care; we must keep the patient and their caregivers as the center of all that we do. Behind every patient record, there is a patient, and we must continue to keep this in mind as we advance health information technology. 

HIEs, EHRs, and government initiatives must work urgently in filling this gap. It is imperative to partner with individuals and families who have firsthand experience of these shortcomings so that we can bring about relevant solutions. There should be no discussion about new innovative solutions without hearing from those who will be impacted directly. Only through this collaboration can we truly embody the whole-person care that we strive for with each patient. By listening to and learning from those most affected, we can ensure our healthcare systems evolve to meet the needs of patients, caregivers, and providers alike. 

Shakera Moreland, DHSc, MBA, RHIA, CSM, is the founder of HIM Concierge Services, LLC. Her personal mission includes addressing external health factors such as socioeconomic elements, patient access, and literacy, as well as an aim to foster the next generation of health information and informatics professionals.